Designing for the Vulnerabilities of the Marginalized

Vulnerability is a concept that is often evoked in public health though many scholars have argued that its exact meaning is often vague. Vulnerability can loosely imply a particular status that may adversely impact upon well-being of individuals or groups (Wrigley & Dawson, 2016, p. 203). In our research, we chose to approach the notion of the vulnerability in an inclusive way and examples of vulnerable groups that we looked at range from large population segments such as low income groups and religious minorities to groups with specific disease burdens such as HIV or TB. Our research confirms the notion that vulnerability is an evolving status (Alwang, Siegel & Jorgensen, 2001), that even within populations that are inherently vulnerable for a range of reasons, there is a wide spectrum of cumulative vulnerability between individuals. For example, a poor family that has recently moved into a new neighborhood may be more vulnerable to a complicated and expensive health journey than a family that has deep social roots in the neighborhood and can leverage this social infrastructure to their benefit.

A core idea that emerged from study was that of a friction, which can be defined as the gap between the healthcare expectations of health seekers (referred to, at times, as seekers) and the ability and intention of the health system to meet these expectations. These frictions range from the lack of accessibility options for differently abled individuals to the real and perceived indifference towards crucial care networks¹ that are likely to make a health journey successful. The frictions add layers of obstacles in accessing and receiving the care that health seekers need. We found that vulnerable populations face certain frictions that the general population may not and experience other frictions more acutely. As such, vulnerability to facing frictions while accessing care should be considered an important component of the cumulative vulnerability of an individual or a population group. Addressing these frictions or designing to mitigate them, while keeping in focus these vulnerable populations, will almost certainly address frictions faced by others who do not suffer (or at least not suffer to a degree) such vulnerabilities.

Understanding and Mapping Experiences of Health Seekers with Design Research

Globally, marginalized groups, such as the poor, religious minorities and differently abled are more vulnerable to health disruptions (Baah, Teitelman & Riegel, 2018) as well as frictions in healthcare access. Marginalization typically emerges from existing socio-economic and political realities. While design, which is an appropriate tool to address practical problems, can be leveraged to mitigate the effects of marginalization, it is incapable (without accompanying political and cultural processes) of eliminating marginalizations. One of the two core objectives² of Amplifying Resilient Communities (referred to as project ARC or ARC) was to use the tools of design research including video ethnography to understand the experiences of health seekers as they interacted with a number of healthcare options. Our primary focus was public healthcare but we also studied private healthcare including traditional and non-medical care, as most health-seekers we studied lived within pluralistic healthcare ecosystems. By documenting and analyzing these health journeys, we were able to identify and categorize a number of frictions that people experience. For seekers, these barriers can lead to a number of negative consequences such as an inability to identify the right avenue of care and engage with the treatment process. For health systems, these frictions are barriers in achieving public health goals such as identifying the right treatment plans for people, ability to reach vulnerable populations, responsiveness/resilience to shocks, among others.

COVID-19 as the Inflection Point

COVID-19 created a volatile situation for health systems and seekers. Interactions with health systems, which were already riddled with frictions for seekers, were more strained. Due to physical distancing measures, government shutdowns and other transmission reduction measures, as well as the widespread commandeering of medical facilities for COVID-19 testing and treatment, people missed essential health services such as antenatal care, vaccines, HIV testing and medication, tuberculosis care, and catastrophic health event access³. Alongside this, the stress put on frontline health workers and resources was unprecedented. Project ARC sought to gain a deeper understanding of how vulnerable populations⁴ interact with healthcare systems (institutions, facilities, and providers) during and after COVID-19 by centering their voices, stories, and experiences. Using COVID-19 as an inflection point, we aimed to understand where the weaknesses were in health systems especially under stress.

Informing the Design of Future Health Systems Interventions

Another core objective of ARC was to frame a set of design principles that are aimed at addressing the frictions that were identified. These principles reflect the lived and felt needs of people — some of the most vulnerable users in stretched health systems. These are aimed at service and product design in health, which could be optimized to enhance maximum uptake, through a deep understanding of the seekers and the context of their lives. In ARC we could make suggestions for building back health systems, something that many stakeholders in global health imagined as an appropriate response to the failures experienced during Covid. But as discussed above, ARC, a design led inquiry was not positioned to make the changes to health systems; design principles, therefore became a way of interjecting important human-centered considerations into the conversation.

Project ARC Team

Project ARC, is an interdisciplinary consortium consisting of: Ipsos, a global insights company composed of global health experts, anthropologists, and psychologists; Matchboxology and Quicksand, long established human centered design companies based in South Africa and India respectively; independent consultant Anabel Gomez who brings an implementation perspective to solutions for key public health challenges. Quicksand worked closely with partner James P Grant School of Public health (JPGSPH) of BRAC University, who led field activities in Bangladesh. JPGSPH took the lead in recruitment and field research, while Quicksand led research design, training for the field researchers and analysis & synthesis. Project ARC was also supported by local champions networks (LCN) in both South Africa and Bangladesh. Additionally, we also consulted a global advisory group towards the latter stages of the study⁵.

Household Survey

A household survey was conducted in January 2021 with 619 individuals across 595 households in Dhaka (Korail urban slum), Bogura (rural) and Narayanganj (peri-urban). The primary objectives of the household survey were twofold. Firstly, to get a broad and early sense of the factors that respondents were concerned with when it came to health and health access and secondly to recruit the participants for the subsequent phases of research.

Figure 2. Research locations in Bangladesh. Illustration © Project ARC.

Round A: Design Research

Design research was conducted across South Africa and Bangladesh between February and March 2021. In South Africa we recruited respondents using an external local organization (Brand iD) and through the Center for HIV-AIDS Prevention Studies (CHAPS) clinics using purposive sampling with guidance and assistance from the Matchboxology team. Screening criteria included: 18-49 year olds living in one of the following four provinces — Gauteng, KwaZulu-Natal, Mpumalanga, and Western Cape. An even split of women and men were recruited from among: patients, providers, and community leaders (self-identified). Eligible healthcare providers (HCP) included: community health workers (CHWS), receptionists, nurses, laboratory staff, administrators, managers or physicians. 85 individual in-depth interviews were completed in total, with 69 patients or “health seekers”, 28 health care workers, 30 community leaders, 42 wildcards⁶, 11 non-health seekers and 5 “other” respondents.

Figure 3. Research locations in South Africa. Illustration © Project ARC.

In Bangladesh, where the household survey was conducted, respondents were selected from among the survey participants. We were particularly interested in including individuals who represented disease burdens that health systems in Bangladesh have prioritized (including TB, Diabetes, Hypertension, COVID-19 etc). Furthermore, we ensured diversity in terms of gender, age, ethnicity and of-course geography. We also purposively sampled for differently abled individuals and religious minorities. A total of 156 participants participated in Round A in Bangladesh across 40 health-seeker in-depth interviews, 33 provider in-depth interviews, 6 health seeker focus groups, and 10 health provider focus groups.

Interviews and focus group discussions were based on qualitative immersion guides that demonstrated Human Centered Design approaches. This allowed the interviewers to also explore areas of interest that arose during interviews, which were not in the original guide. During research planning, global immersion guides were first created with the overall lines of inquiry. Subsequently, localized guides were created to ensure sensitivity to local contexts (including language localization) through detailed discussions with field research partners. Additional design research probes accompanied the immersion guides to support the research inquiry. In design research, probes allow researchers to engage participants beyond answering questions and invite them to participate in collaborative discovery by mapping and reflecting on their life experiences (Mattelmäki, 2006). Figures 4.1 and 4.2 below show one of the research probes we used to collaboratively map key influencers in an individual’s information ecosystem.

Figure 4.1. Research Probe: illustrations of a few influencer cards — parents, religious leaders, and government officials — from Bangladesh used to dive deeper into questions of trust and access in the information space. Illustration © Project ARC.

Figure 4.2. Influencer cards laid out during the research activity at a respondent’s home. Photograph © Project ARC.

Since Round A was conducted as the first COVID-19 wave was still fresh in the memories of participants, a significant part of the inquiry focused on understanding healthcare experiences during the peak of the pandemic, especially during lockdowns. Apart from this, our inquiry focused on these broad areas:

1. Deepening our understanding of what “health” and “healthcare” mean for our participants.
2. Deepening our understanding of how and where participants sought care, including non-formal avenues such as traditional healing.
3. Collecting the outlines of a number of participant health seeking journeys either during the pandemic or before it.
4. Understanding the influencer ecosystem around individuals, which shapes their perception of their own health and public health initiatives and directives.

Considering that further rounds of research (including video ethnography and the second round of design research) were to follow this phase, the lines of inquiry were deliberately kept broad so as to elicit a wide range of responses, which could inform further rounds.